bedridden with low blood volume in pots syndrome
 

Hi everyone.. my name is gillyann.. i live in the uk,57 years old and im bedridden due to postural orthostatic tachycardia syndrome..it came to light last year that i have very low blood volume..i have low red blood cells and plasma.. this is the main reason i am bedridden.. i am on fludrocortisone 0.2mg for the plasma and have only just started on epo injections 10,000 units once a week for the red blood cells.. i suffer from a tight chest, breathlessness, bad blood pooling in my stomach and legs.. i have no quality of life at all..my daughter has had to do this post for me..is there anyone else like me or in my position..i would love to hear

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Hi Gillyann, and welcome to NeuroTalk!:hug: This is a great place to hang out with lots of nice and friendly people.:)

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I don't have a lot of info on POTS. * * info from YouTube to help others share. * * there is a Channel 7 report where a Chicago Peds doctor is referenced and Dr. Blair Grubb is referenced. This illness seems to be brought on - or brought to light - by an illness such as the flu. That is to say it is usually there, but not a problem until an illness short circuits the system. It is my understanding that the Mayo Clinic is good for diagnosis and treatment. This is from a doctor who has POTS and has recovered enough she can work 2 - 3 days a week. Good luck and take care!

welcome to neurotalk ... there are lots of friendly and supportive people here so jump right in and start posting(your daughter can post too ... we have a great social chat room and also a caregivers forum ...
http://neurotalk.psychcentral.com/forum35.html social chat room
http://neurotalk.psychcentral.com/forum56.html caregivers forum
should you need help, don't hesitate to ask someone ... we are here to help ... again ...
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hi Im carol from wingham ontario canada I have had pots for 4 years now . It does inprove slightly with time I now can work at my own pace. the worst is getting the doctors to pay attention. the meds suck I have been on floronef atenial midodrine bisoproplol and many more. i also haave vasovagal syncope hang in there it should get better

Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are here to assist each other as possible.

Again welcome, looking forward to seeing you around.

Darlene:hug:

Gillyann hello and welcome to Neuro Talk, sorry for the reasons but glad you did find us. Follow the links posted and do not hesitate on postings questions concerns or ideas you may have, there are so many nice and helpful people here, again welcome to NT

pots
 

I have no idea! Im 33 years old dx w/ pots. I have never had any symptoms or major illnesses. One day at work (june 7 th) started to feel dizzy, got real hot, chest palpitating, fingers and hand got numb. I thought i was having a heart attack.Then i passed out for only a min though. I work in a hospital so they took me to ER. They sent me home said i was fine. Next day ended up in ER again, and again they sent me home i was fine. For three days i laid and did nothing. I then decided im living my life. Went shopping with my husband, not a good idea. I almost passed out again, I had to lay on the ground. Later that night i must have pushed myself. I thought i was gonna dye. My heart was pounding.

I called 911, they admitted. I stayed 3 days. Failed tilt table test in 2 mins. They put me on Florinef for a week, no success. Atenolol (beta blocker) for two weeks, kinda scary b/c my bp is low to begin w/ 95/65. It get down to 85/58at times. It did lower my heart rate from 115 standing to 85-90. However, it did not solve my problem. I still get the chest and throat tightness, dizzy and lightheadedness, brain fog and confusion all w/ standing only. Im fine laying and ok for the most part sitting. I just cant have my legs hanging. No symptoms until my legs are in a standing position. Does it take awhile for the beta blockers to work? Or maybe i need to try Midodrine (a vasoconstrictor) blood could be pooling in my legs. Did you try Midorine before. I feel like im not getting blood to my head and tht would explain my symptoms. I went to another doctor he changed my atenolol to nadolol a non selective beta blocker. My heart rate seems to be higher now. (maybe it takes some time) I also take salt tablets.

I am so completely confused and sad. 5 weeks is a long time for me to sit and do nothing. I went from full time job, part time school, being a mom and wife--------to sitting and doing nothing. Where is the cure, research, help? Sorry had to vent. :(

I hope and pray this goes away as fast as it came!

Welcome to NeuroTalk.

Some doctors use Mestinon for POTs.

Here is some information to read:
http://en.wikipedia.org/wiki/Postura...ardia_syndrome

HI,

I am a 46 year old woman with pots I have had the conditon for 17 years and in April of this year my symptoms worsened. I also take nadadol and am going to be starting midodrine 2.5 twice a day kinda nervous because it can spike your supine blood pressure. I have been searching for a while for a support group or someone to kinda vent too.People who dont have it try to understand but until you experience the symptoms and live with its so hard to appreciate the struggles of daily living. Hope you are well.

Julie